Support/Information sharing thread for parents of children with CP - part 3

[itsnothingoriginal]

So here we are - thread number 3 to provide information and a source of support for parents whose children have been diagnosed (or not yet dx) with Cerebral Palsy.

Welcome to parents finding us for the first time and welcome back to any who have posted before

Quotes are in!

1. Tomcat Fizz Trike = £1,686 for our requirements.

Or,

1. Tomcat Fizz Trailer Trike (a trike plus a pullalong trike section that attaches to an adult's bike) = £2,344.

To be fair, I was probably expecting worse. I'm just trying to figure out if Little Miss Independent would ever settle for being pulled along behind my bike, and if it's therefore worth going for the trailer version or not.

hi everyone

DS had his first Bowen therapy on Friday, it was fine, he wanted her to stop fiddling with him while he was playing but otherwise it was ok. No noticable results yet but obviously it's early days. Only charged us £15 so more than willing to give it a few more weeks and see how it pans out.

We are having a bit of a crisis of 'are we doing the right thing' re his treatment, I don't know whether it's his splints or not but his tiptoe walking has got really bad and he can't walk at all now without his splints, even with shoes with small wedges in. Thinking of getting a second opinion with a private specialist. Has anyone done this? And could anyone maybe recommend a really good specialist? How do I find out who the top specialist is in the country? Really don't mind paying.

Just want to check we are doing the right thing by him. Really not seen improvements for a while and starting to get disillusioned and worried he won't make any more improvements until 6, which is what his level on the GMF scale seems to suggest.

We also have got the date through for his MRI, it's in 6 weeks time. Really worrying about it already. Scared they're going to discover it's some kind of genetic disorder or something that's going to get worse.

Hi Babs I didn't want to read and run :( Sorry you guys are having a rough time at the moment. I don't know about splints, but thought maybe your physio, orthotics and Paed could give you some good advice? I don't know of any private physicians either, but someone else with experience might be along shortly. ((Hugs)) it's not easy, hope you get some of the answers you need.

Babs I don't know about leg splints either, everyone on here seems way more knowledgeable than me. I think because dd is only 2 I am at the early stages. I don't even know what the GMF scale is.always feel out of my depth here

where I know you posted the price of yours that's why I said about fainting. No upset intended.

everyday cant believe those, personally dh and I would have to save for a long time :) I'm sure no matter which one you choose she will love, having the attachment for your bike could come in handy though if she gets tired. If you plan on going out together that is.

Cheers Melmo. We do cycle together (I have a Halfords bike trailer that DD normally sits in) and we do a lot of Center Parcs holidays, so I think we'll have to do the trailer version otherwise Im going to be walking round CP 'steering' for DD2 instead of cycling.

Hey Babs The thread has been a little quiet recently, but I just wanted to check you guys were ok? Sending hugs.

Hi Babs - hope you are ok. Sorry i dont have experience about splints, but i just wanted to direct you to a Facebook page that may be able to help. Its called "SDR UK (Selective Dormal Rhizotomy)". I just thought it may help as there are many parents on there with kids who have splints, toe walking etc and they may be able to give you advice. I know some parents on there have been to see specialists too.

I've heard about Evelina London Childrens Hospital, their website says "We specialise in the management of the orthopaedic aspects of neuromuscular disease, especially cerebral palsy."

Also at Guy's Hospital they have the "One Small Step Gait Laboratory".

Hopefully there are a couple of ideas for you to look into. Its probably the way we want to go also when DD is 3. I dont trust the consultants at my local hospital. They all seem to be about "wait and see".
Her progress with standing and walking seems painfully slow. I really think its holding her back socially and cogniively.

Let us know how you get on. xx

thanks everyone for the support. RedFox thanks for those suggestions, will take a look now.

He's now officially outgrown his splints - he wont let us put them on and its almost impossible to get them on anyway. Pre-orthotics appointment on Friday then probably up to six weeks to get new ones. Sigh. He now has wedges in his shoes (new shoes as he's outgrown his regular shoes too) but they're not really helping him to walk independently. maybe one or two steps, sometimes he wont even attempt. He's ok with his kaye walker though but its big and cumbersome to carry round and take places so we are defaulting to the pram which won't be helping.

We've taken him to quite a few soft play sessions in the last week as the physio said getting him to walk up slopes and similar will help to stretch his calves a bit and to hopefully lessen the tightening.

Second Bowen session last week, it was quicker than the first as he's getting used to her. Still no real feedback/changes/results from it but what she said recently made a lot of sense.

I told her we had no official diagnosis (although we have the scan date, about 5 weeks away) and she said it was possible it could be nerve damage as a result of the birth rather than brain damage, and that the NHS have just assumed CP and are treating it as such, by focusing on the muscles, but the muscles won't work properly without the nerves being ok and she said that where the nerves which run down his legs meet his back is a really good place to concentrate on, as any new feelings or sensations in that area will send messages to the brain and back to the muscle to check what's going on - this action will encourage healing. I've paraphrased what she said - probably badly and possibly inaccurately - but a two-pronged approach (physio for muscles and Bowen for nerves) sounds like a good idea. Feel like we're doing a bit more now for him even if we're not seeing results just yet...

Babs it sounds like you guys are doing as much as you can . Although the scan is a daunting prospect, hopefully it will give you some of the answers that you need. We're here for hand-holding as the time approaches.

DD2 had piedro boots, but she now has orthotic insoles (issued by NHS) for normal shoe-shop (independent/Clarks) shoes. As these shoe-shop shoes are less stiff than the piedro's, she can now bend her foot in a normal walking style at the toes, which has improved her walking gait.

Our Bowen therapist says a lot of eminently sensible stuff too, and over time we have seen a massive improvement in DD2. I'm a science person (retired engineer) and not really into alternative medicine, but I cannot doubt the impact Bowen has had on our DD2, even though I still struggle to find authoritative scientific credence. It works for us; I just leave it at that without really exploring the 'why' .

I think you just keep doing all you can, as you are. All our children have enormous potential, and usually enjoy defying the odds and surprising us all.

Thanks everyday, inspiring words.

xx

Hi everyone. Just checking in as this thread seems to have gone very quiet recently. We are just back from holidays in the UK. A while back we had OT out with us who said she wanted to measure our dd up for a wheelchair so thought nothing off it until Monday morning I got a phone call and 5 minutes later it was in our living room. It is an Invacare Action Junior 3 and to say I hate it is an understatement. It's not feminine looking at all and to me it just screams disabled. It is currently hiding in the shed and I am doing everything in my power for my dd to be as independent as she can possibly be.

My dd has been doing well. Her balance and co-ordination are getting better and she seems to be getting more stamina and to do longer distances. Still keeping up with her physio and she is due to get new afo's soon. A 13 week wait here after fitting. Does anyone else have to wait so long? Even her physio thinks it's ridiculous as children's feet grow quickly and by the time she actually gets them her feet will have grown again. Try explaining that to them on the phone though, I might as well talk to the wall!

Hope everyone else children are keeping well and continuing to make progress. Albaba x

Hi Albaba glad your dd is doing well.

That's the same wheelchair that we have. Ours 'hides' in my car boot. It was outed today for the first time at school, as we decided to walk the school run. I didn't like the attention it attracted . The more people were being nice, the sadder I felt. But DD2 loves her Frozen wheels and feels none of the hang-ups I do about it.

Hiya albaba and everyday glad to hear dd's are good. for the wheelchair, ours is on the horizon and I am really not looking forward to it either.

My dd is good too, her speech is going from strength to strength which is amazing but her physical development seems to have completely plateaued. She is Becoming more resistant to her physio and when she finds something difficult or she doesnt want to do something, she purposefully collapses. Grrrrr!

She still can't stand independently or walk and although they are about to introduce a kaye walker, I am worrying that she will not progress from this point. I know she won't walk distances, but I want to be hopeful she can at least manage her way around home at least. But at this rate I am not sure.

On a plus, we went on our first foreign holiday over Easter, it was great and each night i was up on stage with DD dancing at the mini disco with eldest dd! DD loved it and I loved her joining in, but found the stares from all the other parents watching a bit tough. But I suppose I gotta get used to that, DH is so much tougher, he just says 'fk them, let them stare and whisper' I suppose the most important thing is DD loved it

We don't have AFOs but a 13 week wait is just ridiculous.

Hi everyone. for those dealing with/hiding the wheelchairs, we aren't massively far from that.

DS seems to be regressing, his tiptoe-info is worse than ever. Can't stand on his own now and has stopped taking steps. Not sure whether that's because we still don't have AFOs that fit, his new ones are due for collection a week on Monday but he's been without for 4/5 weeks.

The Bowen hasn't shown any improvements although for first three sessions we tried to get him to stand against something playing while she did the moves, but yesterday I took the iPad and he laid on the bed watching Peppa Pig and let him do it all, I can't believe I
Didn't do it sooner

I also wanted to ask something. DS will be starting at a new nursery soon, he'll be in the 3+ room as he is almost 3. But I need to know what to tell him to arm him with a response when the new children will inevitably ask him why he can't walk.

He's said 'because I'm not normal' before which broke my heart but I want him to know an age appropriate way of describing it. Anyone have any ideas? I thought by talking about how he's still 'learning to walk' might mean he'll say he's still learning. Or something like 'my legs don't work the way I want them to' or something?! I fucking hate all this. He's old enough and articulate enough to need to explain it more properly but still need something age appropriate to tell him and hope he uses that when he's asked at the new setting.

BABS. I am really sorry to hear that you think your ds is regressing. I know how hard it is. My dd for her is doing relatively well for her and for her condition but when I compare her to other children of her age she is miles behind. Seeing others running and jumping effortlessly is hard to take when I think of all the work we have had to put in with my dd to get her to were she is now.

I am sure you have read about our situation with the afos's. We have been without them for months now. Things are painfully slow here and trying to get a cancellation or explain that she is a child and needs these to help her walk has just proved pointless. She may only be a name on a bit of paper to someone in an Office but this affects her and all of us as a family.

We have just got through a draft statement for my dd which made for depressing reading saying what she struggled with and what she would need extra help with. Yesterday we found out that my dd had been accepted in to preschool for September at the same nursery were she is at present what is good. The way her birthday falls means she will be old for her school year as there is no way she could have coped going in as one of the youngest. With the nursery were she is at the moment all the activities seem to be in the nursery or in the garden. This is fine. She has been going to the nursery for two years and knows the layout, routine etc. I know in the preschool however they take them out on day trips and I don't know how she will be able to cope going to unknown places and surroundings. It's a minefield of thinking about things that I never thought I would have to think about!

A few weeks ago my dd started saying "I can't walk my feet are too small" which set alarm bells ringing with us. The only place she would be on her own without us is at nursery and we were worried that maybe some of the other children were saying things to her. We praised and told her of course she could walk. We were all set to raise it with the nursery but she seems to have stop saying it. So we are just going to keep putting the work in with our dd over the Summer hopefully outside so she thinks it fun when it's really physio work too so she can be as best as she can be for preschool in September. Take care Albaba x

With DS he started by saying he was born too soon, and his legs don't work as well as yours do as everyone is good at different things. That worked well between 2 and about 4. He now says he has cerebral palsy.....

With the wheelchair ours lived in our shed for a year. It now lives in the shed at school.... They use it for trips out, the other children all fight to push him! The one we bought ds loves a lot however.

Similarly, we explain the difference to other children that "dd was born very very early and so her legs don't work like yours and mine at the moment, but she is learning, but she loves all the same things you do, such as peppa pig and playing outside" and that's how we will initially encourage dd to tell others.

Some good ideas there, both, thanks

Has anyone moved house and LAs? We have sold our current home and we are moving to a different LA, does anyone have any experience of this?? We have not mentioned it to dd nursery or any health care people yet. I had 'heard' that we will not be able to take any equipment with us?

Summer we are doing this at the moment, we move in two weeks. No one has said anything about returning equipment (we have a kaye walker). I mentioned our impending move about 2 months ago at our last consultant checkup and she said she'd start the arrangements to move our care over and since then I've had one call from our old health visitor who wants to do a mini 27 month check (he's actually 36 months ) but she says its just something to 'hand over' to the next LA.

We have new splints on their way currently and our current physios are trying to rush things through for us so we get it all before we go. They even booked in an intensive hydro course. I think we might miss out on their next trike day but that date depends on lots of other factors so appreciate they can't move that for us.

We also have the MRI which will actually be after we've left, it's in a London hospital but we'll still be within driving distance so it's not a problem.

So it's been ok so far but am
Still not there yet!! I rang the new place children's development centre and think I just ring our local one when we move and they'll transfer stuff over without having to find a new gp for referral etc.
hope that helps a bit!?

Also does everyone here know that 2yos can claim the two year funding for childcare if they claim DLA? I didn't realise until speaking to the new nursery about settling in days! Halved our childcare bil

I just had this conversation with DD2 yesterday. She's going to be 4 in June. Language delayed and impaired mobility on both sides. She's able to say her that her brain sends wrong messages to her muscles and that she has cerebral palsy. She asked innocently if her 'brain was broken' and did she 'need a new one'. I don't think I have cried so much . But she's just so happy and gets on with it.

I just wanted to add a positive story. My ds is 5 and yesterday we took his trike to a big national trust place and he was on his trike for about 6 miles.... All his own pedal power DH kept having to run after him while he was going poop poop pretending to be toad from wind in the willows. I will have to get fit.....

That's brilliant where. That'll be us this summer :) :)